When the Patient Can’t Tell You

Today I had a followup appointment with a young adult male with severe intellectual disabilities. He is barely verbal. Several weeks ago his caregiver told me that this young man often pointed to his chest and would say “hurt” or “heart”, they weren’t sure which. He also seemed to have gotten pickier about his food, and would literally pick at the food on his plate as if examining it. His appetite was definitely down, but he hadn’t lost any weight yet.

Jimmy is young and slender, not a smoker, and has no cardiovascular disease in his family, so I prescribed him omeprazole.

“So, how’s Jimmy doing”, I asked.

“He doesn’t bang his chest and say hurt anymore, and he finishes anything we put in front of him” was the answer. “And you know what, I didn’t say anything last time, but he’s been kind of grouchy lately, but that’s all gone, too. He’s like the kid I first met years ago, always in a good mood.”

“It’s humbling”, I reflected, “to care for someone who can’t tell you very much about how they feel. I’m glad you were so observant.”

(A brief aside about the Metamedicine aspects of this case: My first prescription for omeprazole was for thirty days and it had one refill. Jimmy’s caregiver said Mainecare wouldn’t honor the refill because chronic medications must be prescribed for 90 days, so he bought the omeprazole over the counter. I shrugged and told him that after sixty days a prior authorization is needed. So, even a “correct” 90 day refill would not have gone through. So we switched to famotidine and if that doesn’t work, we’ll apply for a Prior Authorization for the omeprazole.)

My visit with Jimmy made me think, again, about the importance of the medical history. Even an observer’s report is better than any number of tests.

Even people with normal intellectual functioning can be hard to diagnose because of ther inability to describe what they feel. I have written before about alexithymia, the inability to recognize and describe one’s feelings. These are the people who, when asked to describe their symptoms, start telling you what other people said about how they looked or how they acted. I had seen many people who were like that, but had never heard of the word that populated my Google search when I typed in my observations in the search window.

Primary Care, and perhaps even more Pediatrics can be like veterinary medicine: the patient doesn’t always TELL you his symptoms. Sometimes he shows you, and sometimes others report their observations to you, but it is your responsibility to make sense of it all and come up with a diagnosis.